By the time an appointment letter for a meeting with an oncologist in Lancashire arrived I was mentally in a bad way and had returned to Orkney, registered with my local GP and started taking Bicalutamide tablets to lower testosterone. I had a phone call out of the blue on 16 November 2021 from a consultant in Elgin. He was very direct and told me that I had a very serious prostate cancer that needed urgent treatment, that I'd probably got another five years to live and would have injections every three months at the local GP surgery. I began 3-monthly injections of Triptorelin, also called Decapeptyl SR, to lower testosterone levels on 18th November 2021. No one gave me any information about its possible effects, monitored my mental state, or offered any psychological support, and I now think that it is a likely cause of further deterioration in my mental state and my concern about a possible stroke or other medical event when I suffered from blurred vision eight days later while in Shetland. I now know that the information sheet for the drug states: 'There is an increased risk of incident depression (which may be severe) in patients undergoing treatment with GnRH agonists, such as Triptorelin. Patients should be informed accordingly and treated as appropriate. Patients with known depression should be monitored closely during therapy.' Among the possible side effects listed is blurring or disturbance of vision.
I didn't receive any more information about the treatment or the prognosis. I knew that the cancer was advanced and inoperable, the letter from the urologist in Lancaster had said that it had spead to lymph nodes and bones, and no one at either the Gilbert Bain of Royal Cornhill hospitals helped me to find out more and get some reassurance that might have helped my depression - they simply gave me multiple psychiatric drugs followed by forced ECT.
It was only after I won an appeal against a Compulsory Treatment Order and became a voluntary patient that I regained some control over my life. In February 2022 I met my oncologist for the first time. He showed me on a scan that the cancer had spread to some lymph nodes in my pelvis and abdomen but not yet to my bones, and added daily Abiraterone and Prednisolone tablets to my treatment. As I was now a voluntary patient and had bought a MacBook I had access to the internet from my hospital bed and was in a mental state to learn more about prostate cancer treatment.
In the summer of 2022, after I had resumed my normal life, I had a course of six weekly radiation treatments. It was rather sobering to see that they were described as 'palliative'. I have four-weekly blood tests at the hospital in Kirkwall and so far my PSA has remained low, although I know from my online reading that at an unknown time in the future it is likely that the cancer will start to progress again. So far the side effects haven’t been too difficult to live with, apart from temperature control being a bit erratic and loss of libido. I wish that someone had told me that a relatively normal life is possible, even with advanced prostate cancer, and offered some counselling or other emotional support when I was first diagnosed. I also wish that I knew about the various online groups and sources of information that I have now found.